Disappointing and frustrated 😩

[Yuki9]

Hello,

Update after having my private endocrinologist appointment last night.

After taking my medical history, the endo asked why I made an appointment when I was being seen on the NHS, I explained my appointment to review my results has been cancelled, and due to my ongoing symptoms I want some help. He seemed baffled and again asked what I was hoping for. My hope for a listening ear and medical advice was disappearing fast.

I had brought my results and latest mri scan. He looked at these and said we need to be checking your bloods every six months, until you go out of range there is nothing to be done.

So, armed with my knowledge from the helpful people here, I asked my questions. By the time he gave his answers I wanted to ask to see his medical qualifications 😩

In a nutshell, he told me that even though I have antibodies for both Graves and Hashimotos, he doesn’t think my symptoms are linked to my thyroid. He said there’s no way of knowing if my pituitary swelling is having an impact on my TSH levels. He said my levels were fine and until they go out of range, which he doesn’t think they will, then nothing is to be done, apart from repeating bloods. I swear he must have said that at least 10 times during the appointment. He refused me T4.

He did say that I have signs of TED and that I should be referred to Ophthalmology, I have had red, dry, sore eyes for months, but just in the last few weeks my right eye has started to bulge, there is white showing above my iris. I asked him if this is related to Graves and he said it might be but that doesn’t mean Graves is active in me, and anyway, ophthalmology wouldnt do any treatment as it’s the early stages. And then he said, you just need your bloods checking every six month, until you go out of range there isn’t anything to be done😡

He suggested that rather than my symptoms being thyroid related it could be chronic fatigue syndrome.

I paid a significant amount of money, left, got in the car and cried!

So, I’ll wait and see what my levels are when I get my next bloods done.

Thanks for all the advice I’ve had so far, even though the appointment felt like a waste of time, I at least was able to question his responses and have my own questions, so I didn’t feel as I have previously when a doctor tells you something and you just accept it.

[pennyannie]

Hey there again :

I imagine his interest more straight forward and focused on prescribing thyroid hormones.

If you are still under the NHS endocrinology department for the known pituitary issue - maybe contact the department direct and see if they can ' bump you up ' the list ?

Even if not - why not phone and see if there is a cancellation appointment queue ?

So sorry - onwards and upwards :

[pennyannie in reply to pennyannie]

Can't remember if I've mentioned The Thyroid Eye Disease Charitable Trust to you before -

tedct.org.uk

I believe they can signpost you to a specialist unit ( generally attached to the large teaching hospitals throughout the country ) where an endo and ophthalmologist both with an interest in Graves and TED, work together to find the best treatment for the thyroid and eyes.

And yes, whatever OTC preparations you maybe using to ease this eye discomfort - all options need to be Preservative Free - even those prescribed ( in error ) by the NHS.

I use a heavy duty gunk squeezed into my eyes last thing at night as it will distort vision but light clear drops throughout the day - and if like me - this bright sunshine makes everything much worse you may feel more comfortable wearing wraparound high UV protection sunglasses, if you need to go out.

[Sparklingsunshine]

Ah yes Chronic Fatigue, I bet doctors thank God every day for that get out of jail free card. The great get out dustbin diagnosis. I'm so sorry that was a waste of both time and money.

[PixieElv in reply to Sparklingsunshine]

You ‘forgot’ depression. Or anxiety. That always a good one too 🙄 😂

[DippyDame]

....and he claims he's an endocrinologist! Well, I'm Queen Victoria!

What an example of evading the problem and attempting to pass the buck ( to Opthal.)

Just because results lie in the reference range absolutely does not mean they are optimal for you as an individual.....but I suspect you already know that

Re TED...

btf-thyroid.org/thyroid-eye...

So the old Chronic Fatigue syndrome was pulled out of the hat, it's a wonder he didn't also suggest Fibromyalgia!

This re CFS

frontiersin.org/journals/en...

I'm a bit of a T3 freak....it's the most important thyroid hormone which I look at first.

Your earlier results are -

Free T3 4.8 (normal range 3.5 - 6.05) = 50.98% through the ref range. This is too low for most people, we aim for approaching 75%

So working backwards that needs to be improved.

Your T4 to T3 conversion looks ok but you need to raise FT4 by way of thyroid hormone replacement/ levothyroxine/T4

Again I think you know that too!

You also need to optimise vit D, vit B12, folate and ferritin to support thyroid function.

At least that useless endo has helped raise your confidence to question any advice offered

We're all here to help....just ask!

[helvella]

Aside from all your other issues, are you doing anything to treat your red, dry, sore eyes?

It is important to protect your eyes using one of the preservative-free products. You might need to use two products - one at night and a different one during the day.

Preservative-free is important because many of us are sensitive to the preservatives often used. So you end up using a drop or whatever, and thjat actual product worsens your eyes! Many start out tolerating preservatives but, with regular use, we become sensitive.

I'm a bit out of touch with products as I no longer feel the need to use them but others on the forum will answer if you need to know more.

Ideally - of course - these would be prescribed to you. However, they are available over-the-counter.

[Tina_Maria in reply to helvella]

For dry eyes, I can highly recommend Hycosan extra preservative free eye drops (red package; manufacturer Ursapharm, Germany). Once opened they last for 6 months. On Amazon, you can get them much cheaper than at Boots or the opticians. If the drops are not sufficient at night, hycosan night ointment (also preservative free) can be applied, which helps the eyes keep lubricated during sleep. When you apply the ointment, the vision gets a bit blurry at first, but it wears off after a while. 😉

[Regenallotment Ambassador in reply to helvella]

I was allergic to all the preservative drops suggested by various places, they made mine worse. Optician at Specsavers told me my eye lids looked like cobblestones 🙄 I was saved by a locum Indian pharmacist in an old fashioned chemist who told me to use a warm compress like a small wheat bag for 5 minutes every night to get the natural oils flowing , he showed me how to delicately massage the lids/inner corners (upper and lower) and it’s been amazing, I only need it occasionally now. First time I did it I couldn’t see for ages, so much oil had oozed out of my tear ducts to lubricate! Don’t do it before you need to be somewhere 🤣

[SlowDragon Administrator]

So sorry you had a wasted and expensive waste of time and money

I hope this endocrinologist wasn’t on the recommended list from Thyroid U.K.

list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists p

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Shelleyblue]

Hi, sorry to hear this private endo was so dismissive towards you. I recommend you join a facebook support group called Thyroid Hub UK. You can show and chat about all your thyroid concerns on there and they can help you too.

[PixieElv]

Might you be able try another private Endo? I, too have pituitary gland issue and see someone out of Gatwick Hospital. I can DM you the name, if you would like. He’s amazing and changed my life.

[Yuki9]

Thank you everyone for all your responses, suggestions and kindness😍

[Kimmi01]

omg you poor thing. I’m sorry I can’t help but I really feel for you. I had a similar experience many years ago when I had been probably wrongly diagnosed with Fibromyalgia instead of UAT. I am so thankful for this site and the people on it and I hope that someone will know how to help you. I also hope it helps to know that you aren’t alone in feeling so overwhelmed frustrated and dismissed.

[Dandelions]

He sounds horrible. Absolutely beggars belief! ‘Yes you do have graves and you do have TED, but they’ve got nothing to do with each other. ‘ You couldn’t make it up.

Good for you for standing your ground and asking all those questions.

Hopefully, the pituitary referral or eye doctor can help.

[serenfach]

"We want you to be really ill before we think of treating you!" WHY? I just dont understand. It is not like we are going in for morphine or something!

I dream of meeting an Endo who actually has something wrong with their thyroid. They may have some understanding of how it feels! Sending a hug.

[HealthStarDust]

I’m sorry for your experience. Perhaps you can engage with a more understanding endocrinologist - ask for recommendations on here or from the Thyroid UK list.

[klr31]

🤦🏻‍♀️